Calling all TNs
Comments
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Rella - I was thinking about you! I'm glad to hear you are doing well on the Xeloda :-).
Babs - thank you, it means a lot :-). What part of Florida are you headed to? I grew up in Ft. Lauderdale, 30 years. Hoping to make a visit there myself this summer. I hope you have a blast!
Marijana - definitely get that second opinion! I know my doctor does Xeloda with radiation for persistent IBC, maybe that would be an option for your skin mets. She said a low dose of Xeloda improves the efficacy of the radiation. I believe there are some women doing it on the IBC board here...I would recommend posting there as well.0 -
Suze- We are going to Daytona Beach. We go there pretty much every year. We reserved a little cottage on the beach, oceanfront. So pool fun and beach fun for me and my little boy and for my DH lots of fishing fun.0
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Okay guys, what do you think about vaccine trials? I found one that interests me - it is for TNs at high risk for mets after surgery and chemo...I might be able to doit after my next round if I get NED.
Babs - Daytona is so nice. I love fishing myself, I'm taking my oldest on a charter this summer. He caught a huge kingfish last summer when we were in Ft. lauderdale. I know you'll enjoy your time with you family :-).0 -
Suze35, I would be interested in triple neg vaccine trial. Where did you find it? Have there been any preliminary studies? What is it targeting? I know of the her2 vaccine trials but never heard of triple neg ones. I am nowhere near end of treatment, but if I stay stage 3 I know I have a high risk of recurrence. I would definitly consider it if were you, and I would like to consider it too!
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bkj. - here is the link to the trial:
http://clinicaltrials.gov/ct2/show/NCT00986609?term=Breast+cancer&recr=Open&no_unk=Y&rank=635
It states Phase 0, but I think all of these vaccines trials are early phase. It is in Ohio, so travel might be necessary. I was surprised to see it myself!0 -
Suze, it looks like patients must be disease-free of prior invasive malignancies for >= 5 years to participate in the trial. Interested to see the outcome of this!
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Summer - that is just in reference to malignancies outside of BC. It is a common exclusion criteria in trials, from what I can see. You just have to be no evidence of disease and 4 weeks out from chemo and/or radiation.
I am also very curious...the idea of using our own immune system is fascinating!0 -
Sounds interesting, maybe by the time I am done with treatment they will have a similiar study closer to Seattle.Suze, are you going to go for it? I think I would if everything lined up right!
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bkj - I'm definitely going to bring it up with my doctor. I am very interested in doing SOMETHING novel - I'd love to be part of the group of women that brings better treatments and cures to TN, as well as ALL types of breast cancer. I still have some time to go myself.
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Is anyone dealing with chemo induced neuropathy? I had to stop my treatment because of it. I see the neurologist tomorrow. My feet are killing me, neurontin only helps so much.
Thanks, Karen0 -
I didn't have to stop treatment, but my Taxol was reduced two different times because of neuropathy. I take Neurontin 3 times a day and L-Glutamine powder three times a day too. I tried accupuncture twice but didn't have much success, although I think it was the doctor maybe, not the treatment itself. Am considering trying that again, with a different doctor.
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Hello all... have recently started to read these threads and am finding them very informative but most of all very supportive...I (I am 56 yrs old) was diagnosed with TNBC about 3 months ago, large tumour almost 5cm, Grade 3, started neo-adjuvant chemo straight away, 4 courses of FEC every 3 weeks, and last Friday started Taxotere..mostly FEC side-effects controlled, but suffering quite a lot with Taxotere, since Monday very achy knees and back and ankles and extreme tiredness, can't seem to be able to do anything and feeling very low... so it's good to read about what all of you are doing and planning and researching..... all the very best thoughts and wishes to all of!
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WOW- Gone 6 days and it has taken me 30 minutes to catch up! Congrats to all with good test results and/or finishing rads or chemo!!
Took the kids (5 and 9) to Disney World! We had a wonderful time. A couple of times I just sat watching my family knowing how lucky I am and realized tears were running down my face. I wondered if I will ever get the opportunity to have another vacation with them. I hate, hate, hate the constant worry associated with this damn disease! I then pulled up the big girl panties and thoroughly enjoyed our vacation. I also got to reconnect with some old high school friends from Florida.
Now, on to the million loads of laundry I have to do!! Happy Wednesday everyone!!
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obxk- I stopped chemo 10/2010 and my feet are still killing me. I have to wear soft flip flops even in the house. I haven't taken anything but am seeing my onc tomorrow for 3 mo checkup. Will see what she says. Makes you not want to do anything! I could be persuaded to walk on the beach tho:) Its flipping hot and humid here, so visitors be prepared! On the beach is the place to be.
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Maria Malta. I just finished taxotere #2. I know it's different for everybody but my first one was pretty awful. I spent a couple of days completely curled up in a fetal position and my feet hurt so bad it was like there were pieces of glass stuck in them. It took almost the whole three weeks to recover from that. I was pretty scared going into #2 but I'm happy to say that this time I didn't have all of those problems. Half the body pain and no neuropathy. My mouth feels gross and my taste buds are shot but it's still so much better than the last time. I did get a major low for a couple of days with both. I've read a few times that the SEs are often a bit better after you get through the first one. Fingers crossed this is you also.
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My first TC was awful and I was down for almost 2 weeks but after that, it was much more maneageable.
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TiffJ: I find myself crying at certain moments especially when I realize how lucky I am to be alive! Big hugs!!!
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Hi All - back after a break of a week or so and wow - was I behind! I took the last 2 weeks and just had a non-cancer life. Went to all of the end-of-year stuff at my childrens schools, worked, shopped, watched some movies, etc. It was great. I started chemo again today - going to do 12 weekly Taxol followed by DD A/C. So far so good - sleepy from the benadryl, but up from my nap now and headed to a swim meet.
Hope everyone is doing well!
dlcw
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dlcw- After my 3rd Taxol infusion, I asked to change Benadryl for Claritin. Worked just as well but without the drowsiness.
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Tifj..I LOVE Disneywordl..we took our kids there when they where 9 and 11..my son wore his Mickey ears the whole time..even to bed..He hates that we remind him of this now (he is 20)..You took them at a perfect age...My DD was 11 and she really thought she was a little to cool for the Minnie ears so I wore them...what a place to go and forget about things!
Doesnt matter if you have cancer or not..the laundry is always there for you..isn't it?
Yes..the emotions of BC...My DD is getting married in 3 1/2 months...haven't bought my dress yet.....was waiting for my May appts. to see that all was well..it was..but I still haven't bought it yet.....
Ya know..I feel GREAT..I almost feel normal ...(pre BC)...but..there is something inside my brain that says..don't get too confident about your health...I can live with that....
Seriously though..to you going through treatment and just beyond....it really, really does get better..I consider every day that goes by without any issues (ie. weird pains etc)..a good day
I'm not sure how to describe this..but really...I'm almost to the point where I'm actually just living....and not freaking out anymore about things...I figure if something happens..well I will deal with it....
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I haven't hears much talk of sleep issues? I'm super tired but when I try to go to sleep, I can feel my heart beating (or is it just anxiety) and often need to take something to get to sleep. I also wake up often. I don't think I'm getting a "restful" sleep.
My other issue is this "pit" feeling in my stomach. I feel like I want something to eat to fill the void but nothing tastes right and the feeling (can't describe it) comes right back after each little snack. I'm guessing that is the taxotere. I guess it's a form a nausea. I have treatments every 3 weeks (T/C) and can't wait until week # 3 to feel normal again.
I am thrilled that I haven't experienced the neuropathy (knock on wood). I'm hoping that keeping my fingers and toes in ice water is doing the trick? Does anyone else do this (just for the time I'm getting the taxotere during treatments).
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Titan- I am so anxious to get to the point of not worrying constantly. I really feel pretty good, but every ache or pain- well, you know!!
I have never seen a smile as big as the one on my daughter's face when Daddy brought her out from getting autographs and pictures with Belle, Cinderella and Sleeping Beauty! We made some wonderful memories this past week!! Your right, the laundry is always there-come hell or high water (wish I could remember where I got that saying from!)
Congratulations on your daughter's wedding!! You'd better get dress shopping soon!!
MBJ- Thank you.
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katfinn..hm..sleeping issues..it will be interesting to see what others have to say about sleeping..I still don't sleep that well...wake up several times during the night...I can't remember when I have slept entirely through the night...it has become routine to me now...wake up..take a drink of water (always keep it by the bed) and go back to sleep.
I know during chemo and shortly after it was due to the drugs.. I don't know what it is now...
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Katfinn- I had the same experience with TC. I did eat a little something whenever I had that yucky, empty feeling, but it didn't really help for long. I am almost six months out and still have sleep issues which I attribute to a dependency on Ativan and a frozen shoulder (very hard to get comfortable). I really did need it during treatment though because of the racing heart and mind issues! I have had other issues come up since finishing chemo and I guess I used them as an excuse to keep taking Ativan. I too did not have any neuropathy issues and had one big toenail get a small black spot on it, but it is almost grown out now.
How many more treatments do you have?
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Titan, I've had insomnia my entire adult life, so I can't blame it on the SEs of chemo or cancer. But I have a Rx for it now, and that helps.
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Had that pit feeling on AC, like I was literally starving, but couldn't eat. I hated it, I would force soup or something down. I lost weight on AC.
Did anyone get headaches from radiation? I've had a lingering headache for over 2 weeks now, not severe, just there. I wake with it, and go to bed with it. I know my brain is clear, so not mets there. The only other cancer-related thing it could be is too scary to think about, and very rare, so I'm not going there. Dropped the Prevacid, still weaning from Ativan...
Feeling down, Elizabeth's passing really hit me hard.
My car arrives tomorrow though, so I hope that lifts me up. I'll post pictures.0 -
I'm getting ready to take my horses to Blowing Rock next week for a week of carriage driving.
I'm cranky though. I am depressed/tired over all these joint aches that I have. I guess I figured that they were normal during chemo and expected for awhile afterwards, so I just kept chugging along, waiting for them to go away.
But when my onc told me last week they were "permanent" that really took the wind out of my sails. All BC aside, I've felt pretty lucky so far, but the thought of *barely* being able to get up after squatting down for the rest of my life is a bitter pill to swallow.
I am (was?) a very active person and this physical slowdown puts me at greater risk for injury working around boats and horses. My mind still wants to go, but my body is in rebellion. And now, so is my mind, I guess, since I am just now starting to have to struggle with the lingering side effects of chemo.
How are others handling this? I hate popping pain pills all the time, since I do so often anyway due to headaches. The pain isn't excruciating by any means, but I sure hate the GD daily reminder of BC and it's after effects when my mind is ready to tuck *that* ugly memory away.
Thoughts?
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Heidi: I have been doing research on low body temperature problems after having chemo. I am now convinced that we are in pain because our body temp is no longer operating at 98.6. I found a great self help website called fixlowbodytemp.com and there is also a support/blog bodytemp.eu. I am learning to "reset" my body temp to it's optimal 98.6 set point. After chemo my temp at nite would get as low as 95.5 and I could barely get my daytime up to 98.0. I did the "reset" and found I could no longer take Melatonin (it works by lowering body temp at night so you can sleep). I slept like a baby last night, had zero night sweats (I had horrible night sweats while being this cold) I woke up with a normal body temp this morning, 97.7 and I wasn't in horrible pain! In fact, I woke up feeling quite rested, even though I couldn;t fall asleep until 12:30 am and woke up at 6:30 am. My aim is to get my body to stay at 98.6 for most of the day after eating. I have zero pain at 98.6 F and slight pain at 97.4 (sleeping temp). I am in severe pain at anything lower. Not sure if you want to go this route, but I have been researching this for months and my friend with BC in the UK did this reset and her hair and eyebrows and nails all started growing in nicely, her skin became soft again, and she is no longer in any pain. I was becoming crippled by the SE's of chemo and I am hoping this will address my issues. I hope this helps anyone dealing with pain issues and SE;s from chemo. Hugs!
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Constant pain here as well, 2 years out from the last chemo this month. Of course I had BMX and reconstruction as well. But I feel like I have the body of someone 20 years older.
Percocet helps. But I know it's a fine line between pain relief and addiction, and I've crossed it before and withdrawal is no fun. I wish there was an answer for us!
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MBJ- interesting info on the low body temp. Mine was a bit low at my onc appt last week. I also started taking Melatonin several months back (5 mc?). It *does* help me sleep better, but are you saying I'd be better off without it?
I don't like taking sleeping pills every night, as they quickly lose their effectiveness anyway. This morning, I took a Xanax @ 5:30 to ward off a headache (I often wake with one but am hoping my next Occipital Nerve Block regains its effectiveness <think it was negated by that Botox injection for my neck>). My GP had suggested Xanax for morning headaches and it did help.
I just hate taking a lot of pills! I don't want to overtax my liver since, after BC, I now know I am a mere mortal. Off to take my temp now...
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